Ben Ayres
Appearances
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
We know that TURBT procedure is critical in the care of patients with non-muscle invasive bladder cancer. With data that shows that CIS was missed by TURBT in more than 45% of radical cystectomy cases and 86% of residual tumors have been found at the original resection site, it's clear that enhanced visualization could be a significant benefit during TURBT's.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Yeah, thank you, Rob. And I've talked already about this being a journey and is a journey for the patient. And we're there to support and help them along that journey. And I think it's really important to appreciate that when you see them for the first time in clinic, you've got to take a holistic approach. You've got to do it as part of a multidisciplinary team.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
So we have a nurse specialist that will support us. And we approach the topics that we need to approach, but see this as the very start of the journey and that we will have, hopefully, several more interactions with the patient prior to the treatment starting. Now, we don't want to add delay to the pathway with cancer. You want to get that treatment started quickly. So these will be...
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Hello and welcome to this podcast on the unmet psychological needs in penile cancer. I'm Ben Ayres. I'm a consultant urological surgeon working in London in the United Kingdom and I specialize in managing patients with penile cancer. We do have a centralized service in the UK and therefore we end up at our center gaining a lot of experience in managing these patients.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Telephone calls, perhaps video calls with today's technology. After that initial consultation, I think once you've built a bit of a relationship up with the patient, that doctor-patient relationship, you can then talk to them time and again afterwards to help build the information that they need. We give them written information.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
We do a health needs assessment, which is a holistic approach, not just addressing their cancer, but trying to address their wider needs. And there's some good documentation out there provided by cancer charities that one can use to do that.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
So we have this holistic approach, give them written information, and hopefully by going through that information slowly and steadily and giving them guidance,
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
time to adjust to it it does allow that shared decision making it does allow those questions to come out i think you know if as a clinician you just give all the information in one go it can be overwhelming to the patient they only take a small amount of it on board and that's why Afterwards, they become potentially shocked at what has happened or the consequence of the treatment.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
And as a clinician, you think, well, we did discuss that, but they didn't hear. And so it's really important you make sure that they've heard, that they've understood, and that you do in multiple ways. meetings.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
One of the challenges we have around the rarity of the cancer is that we centralize the service in the UK, which means that there's the expertise to deliver that, but the patients often need to travel a long way. And so that's why we have to use technology to help. Yes, we do need to see them. We do need to meet them and build that initial relationship. But then further conversations can be had
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
using telephones using video calls to try and take that burden off the patient traveling into the center at every point clearly they need to come for for some of the treatment and then after we've been through the treatment i think to try and help start to address some of some of those psychosocial needs that as i said unfortunately a lot of patients tell us are unmet again it's really important you take that holistic approach it's really important that they when they come and see you or when you do your video call to go over there
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
their follow-up clinic appointment that you're not just thinking of the clinical you're not just looking for disease recurrence and checking the you know wounds have healed it's important that you do have that ability to open up discussion around how the surgery has impacted the patient how it's impacted them psychologically how it's impacted their ability to pass urine
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
How maybe no longer being able to use a urinal and needing to go in and use a cubicle, how that might have made them start to feel socially isolated. You know, I've had patients tell me they stopped going to watch their football or soccer match or rugby or other sporting event because they felt isolated. They have felt that people will pick up that they're not using the urinal properly.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
when they all go into the toilet at the break at half time. Likewise, they may stop seeing friends down the pub for similar reasons. They don't want to have to answer those awkward questions around using a cubicle. So it's important to try and help the patients open up and then be able to try and discuss some solutions that they might be able to follow. Another
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
consequence of the surgery is lymphedema. So again, having access to expert lymphedema therapists and being able to put patients in the direction of specialist lymphedema services is really important. One of the things that has been used by some units here in the United Kingdom are patient reported outcome measures.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
So by sending that documentation out to the patient ahead of their clinic appointment and asking them to fill that questionnaire in, it almost is unlocking those questions and giving the patient permission to say, look, these are the sort of things we expect to talk about in the consultation, but you're allowing them to fill those questions in before they come to clinic.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
So it allows you then in the clinic to say, I've seen your questionnaire and you've mentioned that you're having trouble passing urine. Let's discuss that more. So again, it can help break down some of those barriers in communication because some patients don't want to
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
I'm delighted to be joined this evening by my two colleagues and I'll let them introduce themselves. So Rick, please say hello to the audience.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
trouble the doctor with their problems or they feel that if they mention what they're going through, the doctor may see that as criticism of their surgery. So again, by breaking down those barriers, I think that's a really, really important thing that can be done. So holistic approach, using patient-reported outcome measures, clearly having access to
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
to a full multidisciplinary team that should include lymphedema experts, psychological counsellors, psychosexual counsellors to really help. And it may be that your hospital is a smaller hospital and can't provide that. Well then it's really important we start working as networks, start working together in a more networked fashion so that those services can be provided to patients.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Talking about this multidisciplinary approach to care, I don't know, Rick, if you've got anything you want to add about the importance of multidisciplinary care in the treatment that you had for your bladder cancer and clearly how we should be trying to work as teams to support our patients rather than as individuals.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Lovely. Thank you very much, Rick, on that. And Rob, thank you for joining us as well this evening. Thank you both for a very, very thoughtful and thorough discussion on how we might approach lack of awareness, isolation, patient advocacy, and how we might try and make a difference for these patients.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
I'd also like to again thank Backtable for their support in recording and producing this podcast and the Global Society of Rare Genitourinary Tumors for this opportunity to talk about this topic. If there are any clinicians or patients out there with rare genitourinary cancers that would like to find out more, then the Global Society of Rare Genitourinary Tumors is a good place to start.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Thank you again for your time, gentlemen. Thank you, Ben. Thank you.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Thank you, Rick. And we're also delighted to be joined this evening by Rob Corns. Rob, please introduce yourself.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Well, thank you both for joining us this evening. And as I say, hopefully we're going to have a good and useful conversation about how we can really increase the awareness and advocacy around this very rare cancer and perhaps what clinicians can do to try and bring a more holistic approach to managing these patients' needs.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Because as I think we're going to discuss, a lot of their psychosocial needs, unfortunately, are often left behind. We're very grateful this evening that we're able to do this podcast and we've been given this opportunity by Backtable and also by the Global Society of Rare Genital Urinary Tumors, a group that is really passionate about.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
education for clinicians and for patients going through the treatment and management of rare genitourinary cancers. So we're very grateful to both these organizations for giving us this opportunity to discuss penile cancer in more detail today. As I said, penile cancer is a very rare cancer. Because of its rarity, there is a lack of awareness.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
There's a lack of awareness amongst the general public. Unfortunately, there's also at times a lack of awareness from the medical staff that the patients may seek for help. This can often lead to delay in diagnosis. And on top of this, there's a lot of stigma associated with this cancer. And as a result, patients can often feel very, very isolated.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Further, with only 23% of patients coming back for re-resection, it's all the more important to do a complete TURBT right from the start.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
So, Rob, I wonder if you could tell us more about the isolations that patients with penile cancer often feel and what's been told to you by the patients you've worked with in the past.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
And Rick, you said at the start of all the advocacy roles that you've been involved in, how do you think advocacy can play a role here? How can advocacy play? reduce isolation and how can it help with raising awareness of these rare cancers such as penile cancer?
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
So when patients present with any cancer, they go through a journey and clearly with penile cancer, there's that additional stigma associated with that journey that can impact on how they process things and how much they open up and discuss things and move through the psychological journey that they need to if they're going to adapt to the new situation.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
But when it comes to awareness, patients tend to fall into two categories. There's a patient that has had a condition for a number of months or years and they've been seeking healthcare advice about this and seeing lots of different doctors, pharmacists, nurses potentially, often being given multiple different creams to try on the lesion.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
And so ultimately, when they are diagnosed with a penile cancer, they not only go through all the psychological stress of being diagnosed with a cancer and the part of the body that it's on, it's a double hit for them. They've also got this anger, this frustration, this disappointment that they had tried to seek help for this.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
And through lack of awareness, through lack of understanding of the clinicians that perhaps they saw, there's been a delay added to their pathway. And so at times you've got... got to try and help them manage some of that frustration, that disappointment, and in some cases anger that they feel towards the healthcare professionals because of the pathway they've been on.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
On the other hand, you have people that because they didn't realize you could get cancer on the penis and because it's a part of the body that they don't wish to talk to their mates about or talk to their other support people or partners about, they've ultimately led to the delay in their healthcare. And then you get this, what if, what if I'd come earlier? And a bit of guilt comes through.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
There's a patient that has worked really hard to help with advocacy here in the UK and has put on a play. And he talks about ignore it as a way of trying to manage with this and having led to a delay in him presenting.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
And I think, again, that adds to that psychological stress because they're starting to blame themselves when, again, clearly they need to try and come to peace with that and move forward. So it does make a big difference, this lack of awareness. So more that can be done to raise awareness is really, really important. So, Rob, we've chatted a bit about the role of advocacy and the isolation.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
And clearly, if patients can meet somebody or talk to somebody that has had that cancer, they may feel less isolated. They may feel more supported.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
Thank you, Robin. I think... In addition, you make a really important point about partners there. Partners need supporting through this journey themselves, but also they can be a huge support for the patient.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
And so whatever we can do to support patients and to help meet the unmet psychosocial needs of these patients, of our patients, it's important that partners are very much included in everything that we do to not only help us support the patients, but in supporting them as well.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
So Rick, earlier on you talked about information and the role of advocacy in trying to produce information that is really patient-focused and the information that patients would like to hear. And I know when I've spoken to many of the penile cancer patients that I see and work with and those that have come through their treatment, they talk about the fact that
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
The information wouldn't have stopped them having the treatment. They knew they needed to have the treatment. This was cancer. This needed to be treated if they had any chance of survival. But the consequences of the treatment for some patients are devastating and carry life-changing consequences.
BackTable Urology
Ep. 199 Addressing Isolation and the Psychosocial Needs of Penile Cancer Patients with Rob Cornes and Rick Bangs
And they say very strongly that they feel as much information as possible up front written by patients would make a difference. What's your experience around that? And how can we as clinicians, those of us that are looking after patients, how can we develop this material? How can we deliver this for our patients?